[SandyB]

Terri:

I hope the Vidaza increase will bring Bob back to more norm in counts.

Have a good trip, and know we are all thinking about you both.

Sandy

[SandyB]

Terri:

I know just how you feel about the machine count differences.

Last month, Mike had a CBC (he has at least 2 to 3 a week) at the Dr.s office. Results: WBC 1.6 HGB 7.8 Plt. 15. Two hours later he was being admitted to the hospital for an ear infection and they did a CBC. Results: WBC .8 HGB 6.6 and Plt. 6 All done within 2 hours of each other in buildings that share the same parking lot.

Our Dr. was letting Mike go without transfusions, even when HGB was 6.3. When he was admitted at the hospital the nurses said that was entirely too low. When they admit a patient with a 6.3 HGB, they are admitted in Critical Condition.

This gets real scary when there are such fluctuations at such desperately low numbers.

I will be praying for you and Bob, and hope that things will stabilize again for him.

Sandy

[SandyB]

Jack:

Thanks so much for telling us about this. I have been having Mike drink lots of grape juice and drinking green tea. Looks like we are on the right track.

[SandyB]

Below is the response I sent to Women’s World. Some were asking how I responded.

Kathy:

Thank you very much for reviewing the article. I did not respond sooner as Mike spent last week in the hospital because of an ear infection. Yes, even an ear infection is life threatening for those that have MDS.

There are a few things I wanted to mention with regard to your rejection of the article:

1. Myleodysplasic Syndrome has no cure. Yes, we would be totally elated if we could provide that ending to the article, so it would qualify for printing.

2. This article was only written so that people became more educated about MDS, since it is one of the quickest growing in occurrence in America and around the world. Does your magazine believe at all in public service or just happy endings?

3. I believe this article is full of happy endings for us. Mike is still alive and has beaten the horrific risk of intense chemo-therapy, survived a Septic (often fatal) Infection, and fights everyday to spend more time with his family.

Your publication could make a difference in leading the way to education and support for the thousands of persons afflicted with this disease.

If you choose not to publish our story, that is fine. But please do have someone investigate MDS further and become a champion for those afflicted. A good start would be to go to the MDS-foundation.org website and visit the patient forum to see how people are affected by this no-cure disease.

Thank you,
Sandy Barbor

[SandyB]

Good Morning All:

Just an update on the article. To date 529 people have read the article. This has driven up the number of letters being printed off to send to Congress.

The not so good news. I submitted the article to Women’s World, and the following was the reply I received:

Hi Sandy,

I was out for a couple of days and am not sure if I responded to this e-mail. So if this is a duplicate, please forgive me. I did receive your submission. Unfortunately, as emotional and dramatic as the story is, it doesn’t meet our requirements. All of our stories need to have happy endings. We would need your husband to beat the disease. Our thoughts and prayers will be with both you and your husband.

Kathy

I guess important issues like how to remove crayon marks from a tee-shirt is more important to Women’s World.

[SandyB]

Jan,

We are very sorry for your loss. May God keep you strong during this difficult time.

Mike and Sandy

[SandyB]

Campbell,

I am so sorry that another good person has to endure this.

Please know that our thoughts and prayers are with you, and try to get some rest for the difficult days ahead.

May God smile down on your husband, you and your family.

Mike and Sandy

[SandyB]

Thank you all for your wonderful thoughts and praise. I am touched.

Just to keep you up to date. Yesterday, there were close to 400 people who read the article. That is pretty good for one day.

Some of you have requested that I email the story and say you will be passing it along. A couple even asked for a printable copy to send to their legislators. I am open to any suggestions on how to make the article work for us in getting attention and hopefully reasearch dollars.

[SandyB]

Jan,

You are the proof that your mother is everything you say. My heart is breaking for you as I read this. It is good for you to share your feelings.

When my mother had to say goodbye, I felt the same way as you. Not only was I loosing my mother, but my best friend at the same time.

Try and remember the blessing of your closeness and trust God to get you both through this hardest of times. We will all pray for you.

Sandy

[SandyB]

Eve:

Unfortunately I have no control over the advertising on HealthMad.

If you email me (SBarbor@comcast.net) I will email you the article from my computer.

Sandy

[SandyB]

Patti:

We are very sorry for your loss. May the Lord give you the strength and peace you need during this difficult time.

[SandyB]

Jack:

This is absolutely wonderful news! You are pioneering a therapy that sounds extremely promising. I think since you are the only CMML patient and doing well, gives others a lot of hope.

I couldn’t agree more with your advice on taking natural supplements. Dr. first, reseach, and then action if you feel stongly that they will help you.

There are a lot of claims out there on herbs and supplements and with no regulatory body overseeing much of it, well, what can you believe. I think that if one person takes something that helps them, there is another taking it that does harm. Who knows when you stimulate the good cells you are not doing the same for the bad?

Then of course there are those, especially taking liberties with claims, that are only in it for the profits. Building false hopes for those when they are the most vulnerable.

I think anyone has the right to do with their bodies what they choose. However, for anyone who is new to MDS, going with the more educated and experienced Dr. is your absolute best bet.

Juicing the all natural and well known vegetables and fruits is probably very beneficial, as long as they have a good solid WBC. But going to the health food store and cleaning off the shelves of newly discovered herbs and additives is a bit risky in my opinion.

[SandyB]

Barb:

Thanks so much for the well wishes. He is feeling much better now, but now we have to try and rebuild his counts again.

Hills and valleys takes on a whole new meaning with MDS.

[SandyB]

Gail,

Please know that Mike and I are very sorry for your family’s loss. May God grant you peace and strength during this difficult time.

[SandyB]

Pat:

So glad that Chuck has had good news. We are struggling a bit here.

Mike had just been moved up to 100mg. Vidaza for 5 days and then off 9 days. Suddenly he got an ear infection and had to be hospitalized.

When he got there, WBC was .8 HBG was 7.3 and Platelets were 6. They immediately gave him platelets for the first time, so they could do some ear surgery.

He came home today, (Thank you God) and will have to keep close taps on counts and fever. His counts now are: WBC 1.2 HBG 9.8 and Platelets 31.

Won’t probably be able to start Vidaza for week or two until everything stabilizes again.

[Author]

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